Dear Epilepsy

Dear Epilepsy,

This letter may be long overdue.  Perhaps I should have penned it twelve weeks ago when you first paid a visit to my sweet, gentle blue-eyed boy.  But I wouldn’t have known what to say 12 weeks ago.  You caught me off-guard.  Three months later, I still feel as though I am at a loss, but there are nonetheless a few things I’d like to say.

According to my son’s neurologist, she’s having a difficult time catching you.  She called you “elusive” and said that you’re progressing.  I am not entirely sure why you need to be, to do either, why you continue to wreak havoc with my son’s tiny body, why you have even come in the first place.

Because of you, a six-year-old boy has to take medicine, a lot of medicine, every day–and it seems as though it’s more and more all the time.  His hair is thinning because of it, because of you.

You have visited many–Edgar is surely not your first and won’t be your last.  And while I have tried to be patient, tried to be understanding, I am not happy with you.

This morning–despite all the valiant attempts by very intelligent, very competent experts to keep the seizures away–you stopped us all in our tracks once again. 

Every time our son has  a seizure he is at risk–not just for his physical safety at the moment but in terms of the health of his brain.  And, you know, he only gets one brain.  I want to protect it, to keep it safe.

But you’re not letting me.  You fight me.  You fight him.  Every time we make a move, you make a counter-move.  And for the moment, it appears you’re winning.

However, at the risk of incurring your wrath even more than we have thus far, I will tell you that we will fight–tirelessly, undauntedly, and until we win.  Because you, epilepsy, will not define our son.  He may have to keep company with you for the time being–or for the rest of his life–but that is all. 

THAT is all.




33 thoughts on “Dear Epilepsy

  1. Samantha, beautifully written. I will pray for my darling little nephew. I’d rather that I had been stricken with terminal cancer or anything else in place of little Edgar. Hopefully, with a lot of help and determination, the little guy will beat this monster. Love, aunt rita

    • Thank you, Rita. Adversaries often unwittingly make their opponents stronger; and we get stronger every day. xoxoxo

  2. Although we would welcome the limits of our challenges, the choice is not ours.
    What is within our realm, is how we adjust to the challenge: with love, grit, and determination. The scientists are the experts doing research. Find your support system. If you need a group or individual to listen, find one or form one.
    “Why?” is not the question to ask, but “How?” How do you work your way through the unexpected? How do we prepare for the unexpected? Some questions continue to baffle, but baffle and battle, differ by a letter, the first and last of FighT.

  3. My dad has had epilepsy since almost 20 years. I know first hand how difficult it is to deal with this condition. When he would go to work, we would worry what will happen if he is driving and gets a stroke? He later resorted to taking public transport, now he is retired. And you said it right, epilepsy has kept company, but THAT is all. Hugz to Edgar – hope it only gets better from here. Sending positive vibes n much love!

      • Yes he is still on medication – and will stay on it for life. He’s been seizure free for about 5 years now. When he got diagnosed, they used to happen very often. It only got better and better. He’s been in ICU on oxygen a couple of times, and it’s been very tough on us.

  4. “Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.” ~Dorothy Thompson

    Someone very dear sent this quote to me when I was battling illness. You, my friend, epitomize courage. Epilepsy is no match for you or your brave, sweet Edgar. You will beat this! Sending lots of love and positive wishes . . .

  5. Dear, dear Samantha, my heart breaks for you and brave little Edgar. If ever your support system is busy and you need some physical being to take over for a while just let me know and I will fly up and stay and “help” as much as possible!!! Tell the boys we are so looking forward to their Summer visit!

    • We can’t wait to see you! And if ever you have a craving for New England–or three silly boys–we would welcome you with open arms! Thanks, Barbara!

  6. Dear Epilepsy,

    Thank goodness you reared your ugly head in a family who has all that it takes to travel with Edgar to wherever he shall go. Just imagine not having Samantha and Don leading the way-oh wait let’s not imagine. Your strength,LOVE & knowledge is helping so many others! Keep up the good work !!!!!! Laurie

  7. Samantha,
    I feel I could sign my name beside yours, we have been where you are. We have fought tirelessly and at the moment are having a season of seizure freedom. Epilepsy is a horrible enemy, just keep questioning & searching until you find the best for your son. We have had success with the ketogenic diet & lots faith. My prayer for you is to continue to find strength for the battle, you can and will win

  8. We are all praying, thinking and pulling for Edgar. Give em Hell Big Man, you WILL beat this!!

    The Seibolds

  9. Sammie Sam,
    No it’s not fair and definitely cruel for this beautiful little boy to have to endure this horror called epilepsy. But knowing you the way I do, Edgar will fight and win this battle! I remember the day you told me you and Don were adopting him and the day I first saw his picture. An amazing little boy got to be loved by a truly amazing family! When I was diagnosed I was in my 20s and therefore I will carry this baggage with me for the rest of my life, but Edgar may get lucky and outgrow this. But even if he doesn’t I can’t imagine a mom stronger than you to deal with it. He needs your strength and you need his, and I have NO doubt that you and the whole family will beat this awful condition!! You are in my thoughts and prayers!
    Sweet Suzzi

    • Thank you, Sweet Suzzi! You have not let epilepsy stop you from anything–and that, my friend, is an inspiration. Edgar may outgrow his (or not); but I am grateful that there are people in his life who live with it and despite it and can show him how it’s done! xoxoxoxo

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